Wednesday, October 23, 2013

Happy 4th Birthday

Travis Gary DiCarlo
Travis Tribute Video
Travis Tribute Video - Vimeo
Travis Tribute Video - Youtube

Travis Gary DiCarlo, first son of Roger and Nicole DiCarlo, was born at San Diego Kaiser Hospital, October 23, 2009 with a Congenital Heart Defect known as Hypoplastic Left Heart Syndrome, or HLHS. The short explanation is that Travis was born with only half of a heart. In order for him to live, a series of three operations were planned.

Due to an infection, Travis had to have an additional open heart surgery to insert pulmonary artery bands on October 29, 2009. He had his Norwood Surgery on November 21, 2009. He was sent home on December 14, 2009 from Rady's Children Hospital of San Diego after spending his first 52 nights of life in the hospital.

After being home for several months, Travis was due to for his next surgery in the plan, the Glenn procedure. But the life of a cardiac kid can change in an instant and life doesn't always go as planned. Due to the anatomy of his heart and some rhythm issues, Travis had what the surgeons called Norwood part 2. They replaced his Sano Shunt with a bigger one, enlarged his pulmonary arteries and installed a pacemaker. This surgery was performed on May 3, 2010. Travis went home on May 17th, 2010.

Around Travis' first birthday in October his cardiologist detected some narrowing in his pulmonary artery and ordered a heart cath. The heart cath showed extensive narrowing in his aorta and his pulmonary artery. On February 17, 2011 Travis had his 4th open heart surgery. He was doing well with recovery until he suddenly went into cardiac arrest on Friday (2/18). After two hours of CPR Travis was placed on ECMO (a heart/lung bypass). Although his heart did begin to beat again on its own, his brain was damaged during the whole ordeal and he lost all brain function. We had to say goodbye to our beautiful boy on Saturday, February 19th. We miss our boy terribly..... 

Sunday, October 20, 2013

Can I be real with you?

This is painful.

It's hard.

Each day, it hurts.

We continue to walk around, handle our commitments, enjoy our friends and family, laugh....but, in the quiet, there is pain.   A pain very real and still very present.  I don't even like to be alone anymore.  Too much down time leaves me reeling.

It hurts me when people allude to me being negative.  I KNOW I'm negative.  I KNOW I fight demons every darn day.  I feel pretty happy with the fact that I can function as a human being some days.  MY grief manifests in weird ways.  My mood can turn very dark, very quickly.  I'm cynical.  I overeat.  I'm lonely, when people are everywhere.  I worry....ALL THE TIME.  I am forever waiting for the other shoe to drop.  People don't get that.  I've SEEN the horrors that  this world can have.

I held my baby boy in my arms as his heart stopped.

I saw that same heart beating from INSIDE his opened chest numerous times.

We stood outside his room while nurses and doctors tried their hardest to save his life.

I was told my sweet boy had no more brain function.

I had to choose that enough was enough and it was time to let go.

I don't know how to live normally anymore.  I can't even remember what it felt like to be joyful and worry free.  I can't remember a time when I woke up and didn't have to fight with myself to make the most of the day.  Through the fog of depression, I scarcely remember who I am.   And, when I seems like a stranger.    I don't recall what it's like not to panic when I hear beeping or have an anxiety attack with the smell of soap.   I don't know what it's like to watch my son grow up and the pain in watching yours is sometimes too much for me to bear.

It is what it is.

This journey ain't for the faint of heart.